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John Byrne, at 88, is diabetic and has lost his sight; his wife, Billie, 86, has gradually succumbed to the ravages of Alzheimer’s Disease. And yet, they are blessed, strange as that may sound to those who don’t know them... or who don’t know their two children.
John and Billie met in 1942 at a USO dance in Kentucky when, according to John, he cut in on her dancing partner. John was a handsome, newly commissioned second lieutenant in the Army Signal Corps, and Billie was immediately attracted to him.They were married in Kentucky in 1943, but returned, after the war, to John’s home in Newark, New Jersey, with their two children, John Stephen (his mother’s way of referring to him) and Patricia (Pat). They later moved to the New Jersey shore.
“Mother wanted her own domain,” says John Stephen. “She wanted to establish her own home and care for her family.” And for many years, that was what she did, supporting her two children as they grew to adulthood, made decisions about education and jobs and life styles, and moved away from home. John Stephen moved to California, where he spent 21 years in a relationship that ended suddenly and sadly when his partner died of a heart attack 12 years ago. Pat was married, had two children, divorced, and moved to Kent Island. The siblings’ locations presented a problem as they began to see early signs of Alzheimer’s in their mother. Their parents were still in New Jersey, and while planning a 50th wedding anniversary celebration, John Stephen says he first noticed changes in his mother.
“My sister and I put certain people on the guest list, and she removed them. I think she just didn’t remember them or what role they’d played in my parents’ lives.” She was also becoming a master at camouflaging her memory loss. “When greeting someone,” says John Stephen, “she would touch their arm in a friendly manner and ask about their family, because that was a safe question. She couldn’t remember their names, so she simply didn’t greet them by name.”
Her son tells a sweet, but sad story about how expert she became at masking her mental decline. During a cognitive testing session, the test administrator identified the man sitting next to her as her husband. “Can you tell me his name?” she asked. After some thought, Billie reached out, touched her husband’s arm, and replied gently “I call him sweetheart.” Seven years ago, John Stephen and Pat moved their parents to Kent Island, where Pat was living. However, they quickly realized that their parents could not live independently. Soon after, John Stephen left his life in California, changed his life “plan” (despite his belief in living by plans), and moved to Kent Island to be with his parents. He did not work, but devoted himself to his parents’ needs. “I moved in because I wanted to keep them together. My goal was to have them with me until the end.”
“When we first realized that Mother had Alzheimer’s, we were horrified,” says John Stephen. “I kept thinking to myself, Dad’s losing his vision, and Mother’s losing her mind.” His father’s initial reaction was one of denial, according to John Stephen, and that has not changed entirely over the ensuing years. However, John Stephen marks the “worst time for all of us” as that time when “Mother herself realized what was happening.” She knew where she was headed, and she took all the right steps to be prepared. Beyond that, her future was out of her hands, and she knew it. Several years passed, with John Stephen acting as primary caregiver, but the situation worsened. Care •taking was demanding, and his mother’s behaviors, wandering, and numerous night awakenings were exhausting. At the same time, John Stephen’s father continued to lose his sight and became increasingly frail. John Stephen had not been able to return to work, and as he describes it, “we were experiencing a real downward slide.” Something had to change.
Three years ago, Billie was admitted to Corsica Hills, and her husband followed shortly thereafter. They now live in separate rooms around the corner from one another, so they are still together. In that sense, John Stephen and his sister have succeeded. John Stephen, who visits daily, has returned to work and shares his everyday challenges with others who make the road easier to travel. He has built a strong relationship with his niece, Jennifer, and her family, who live on Kent Island, and is known as “Uncle John” in their household.
Among those who help are, of course, the Corsica Hills staff. The Department of Aging has also played a key role in helping, as has Mother of Sorrows Catholic Church in Centreville, John’s many friends and neighbors, and most recently, Hospice’s Spiritual Care Coordinator, Melody Sutherland. Since Hospice of Queen Anne’s joined the team of individuals working with Billie, a Hospice aide takes care of Billie’s personal hygiene five days a week, and at least one meal a day is also taken care of by Hospice. According to John Stephen, “Hospice has brought some order to Mother’s life.” He describes his mother as a very meticulous, orderly person. “Mother always wanted things just right,” he says, “and Hospice has made such a difference in her environment.”
John Stephen would not agree with this description, but he is a very selfless person. He is someone who gives and does it graciously, and he will tell you quite frankly that he has never been worried about himself and the life that may appear to be passing him by. He strongly believes that most people think too much about themselves and not enough about others. Clearly, he and his sister do not fall into this category. Although Pat has since moved to Florida, where she and her partner are raising a child, she is very involved in her parents’ situation. She takes care of the voluminous paperwork related to their illnesses. As John Stephen acknowledges, “This takes a huge burden off of me. We are each doing our part to help —- the part we can do best.”
John Stephen appreciates the efforts of Hospice, but wonders if there is widespread knowledge of the programs and services available to those who need them. His feelings about Hospice are best summed up by this observation: “At the time when you need them most, they are there.” I’m confident that his parents would say the same about their children. Asked what he thinks about these days, John Stephen replies, “It sounds strange, but I think about the arrangements we will have to make—-the service, the funeral, the details that require attention when someone dies.” For now, however, he thinks about the living and being there each day to be with his parents. When asked how they are doing, he says, his reply never varies: “Dad’s doing okay, pray for Mother.”
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